CELA 2011 - WheelchairJunkie

During a dinner at CELA in Washington D.C. – the annual complex rehab technology consumer advocacy effort for sustained mobility funding – one of my fellow advocates at my table, who was from the Detroit area, summed up our mission in a very unique way. “Look,” he said. “If you had one shot or one opportunity to seize everything you ever wanted in one moment, would you capture it? Or just let it slip?”

He, of course, was quoting song lyrics from Eminem; yet, the lyrics and point made were especially poignant to our occasion: We, as the ultimate stakeholders, can't allow mobility funding to fall by the waste side – because once it's gone, it's gone. This is our one shot – are we going to capture it, or just let it slip?

With Group-2 power wheelchairs now a rental item, and funding for complex rehab technology slashed over and over since 2006, we're at a critical juncture. If we're going to stop an erosion in the funding of complex rehab technology – that is, individualized power and manual wheelchairs for those with severe disabilities – we need them recognized as their own distinct funding class. For example, both canes and prosthetic legs help those in need walk. However, while a cane is an off-the-shelf, simple device, a prosthetic leg is a totally individualized, custom-made limb – and Medicare, of course, has prosthetics in their own funding category, certainly not lumped in with canes.

Yet, for all intents, Medicare barely differentiates complex rehab technology from standard mobility products, so the needs of those with the most severe disabilities are barely recognized, often requiring a funding battle to get their needs met. Our goal, then, through CELA advocacy efforts and a forthcoming bill, is to create complex rehab technology as its own product and funding class, ensuring access for those in need. You might say that we're striving to ensure that one metaphorically doesn't get stuck with a cane when one needs a prosthetic leg.

Every year that we attend CELA, it's truly bittersweet. On the one hand, the fact that we've had to go year after year means that our needs haven't been met, that we're still fighting to ensure mobility for all. However, every year attendance at CELA grows, as does our reach and long-term impact. This year, attendees met with 222 congressional offices, where state “delegations” of five or so members – typically including an end user, clinician, provider, and manufacturer – met for 20 to 30 minutes with elected officials and staff.

I was very pleased that out of my own seven meetings, I had invaluable face-to-face conversations with my senator and two congressmen from my region (it's not uncommon to only meet with the legislative aide in charge of health care agendas for the representative, so meeting with the actual elected official is always a huge plus). I found that my three elected officials (two of whom are new, and the third I have a bit of a long-term relationship with), really understood what we're going for. When we explain in simple terms that we're not looking to dramatically increase Medicare funding of mobility products overall, but to create a distinct entitlement of complex rehab technology for those with severe disabilities, so that they can pursue education, career, and community – and move from being on the system to being taxpayers – it truly seems to resonate with them. It just makes sense when we explain that our goal is to protect the mobility needs of those with severe disabilities – it's a totally rational message, especially when delivered directly by those of us with severe disabilities. Put simply, we're in their offices, face-to-face, delivering the overall message of, “I am the constituency that this funding serves, this is the mobility technology that my life depends on, and here's how having the technology not only benefits my life, but all taxpayers because with it I'm healthier, more active, and employed.”

Indeed, I believe it's the personal level that's going to serve as the catalyst to get the ultimate legislation passed. While a bill hasn't yet been introduced (it's in draft form), once it's making the rounds, we need each representative to put a literal personal story with it during his or her consideration. I know that when it comes across the desks of my senator and congressman, they're going to think of me – not based solely on our CELA visits, but because we're going to be running into each other at dinners and charity events throughout the year, where I'll absolutely remind them each and every time of the importance of the legislation. When they think complex rehab technology legislation, I want them to immediately think of that articulate guy with severe cerebral palsy, whose story they know – me, that is.

And, you should do the same. Schedule an appointment to meet with your representatives at their local district offices, and simply explain, “There's legislation being introduced to make complex rehab technology it's own benefit, and here's why it's important....”

Again, we're at a point where our one shot is coming, and as the ultimate stakeholders, we can't let it slip. Prime the pump by bringing your elected officials up to speed now; be ready to spring into action once the legislation is introduced; and, make sure that you're one of the literal faces behind the bill when it lands on your representatives' desks.

I encourage you to read the complete CELA Complex Rehab Technology Proposal (PDF file).